A Story of Hope

Hanno's Story

A story of perseverance aiming to inspire HOPE.

I was born a perfectly normal child. From a very young age, I loved to be outside and would often be found with a ball in my hand. I always loved to go hiking and ride mountain bike with my dad. I always went exploring and was fascinated by nature.

I played every sport that I could possibly manage. From rugby, cricket, and tennis to swimming and athletics. If there was a sport to be played, I participated. All in all, I was just a fun-loving "normal" (if there is such a thing) child.

At the age of 10, in Grade 4, my left foot started dragging behind me. I started to walk funny and was soon unable to run. My parents started to search for answers and at that time, we consulted countless doctors and medical experts. No one could help and every doctor had a different diagnosis and treatment strategy. So, I was put through every possible treatment that seemed as if it could help, but nothing helped! My symptoms were exponentially getting worse and within 6 months, I was unable to walk. I made use of crutches to assist me at that time. This was extremely hard for me as I could no longer do the sports I loved or play with my friends outside. I always had to sit on the side-lines and watch.

I had to make the decision, at age 10, that this illness would not beat me, I was not going to give up and that I would keep holding on to the promises of God for a full recovery. I told my parents that my name is Hanno - "Hou Aan Nooit Nooit Opgee". But at that time, I had no idea how difficult life was still going to get.

Me playing Cricket at Buffels Bay in 2005, age 11.

I was still passionate about sports and the outdoors. I would go hiking with my crutches and even climbed Lions Head Mountain in Cape Town multiple times on my crutches, which was an incredible personal victory. I kept an adventurous spirit and as a result, went through a pair of crutches a month. I did not allow this illness to dampen my spirit. I started participating in wheelchair sports, primarily hand cycling and wheelchair tennis. This brought back drive and excitement into my life. It was not long before I was the top junior wheelchair tennis player and hand cyclist in the country. I won 3 gold medals at the national hand cycling competition in 2008 and went overseas to compete in tennis tournaments as one of the top 5 juniors’ players in the world (more about that later). During this time, I was frequently in and out of hospitals and doctor's appointments to try and figure out what was wrong with my body. Although everyone saw me smiling and doing well in sport, I was fighting with everything I had to stay afloat and keep going.

High School (2008)

My condition kept getting worse. My muscles cramped and twisted more and more each day. I was in constant pain but kept pushing forward. Because my condition started at such a young age, my body did not develop correctly. Some muscles were overdeveloped, and others were completely underdeveloped. As a result, my body had become deformed.

The doctors finally got an answer to what was wrong with me. I had an illness called Dystonia. Dystonia is a movement disorder that causes the muscles to contract involuntarily. This can cause repetitive or twisting movements. The condition can affect one part of your body (focal dystonia), two or more adjacent parts (segmental dystonia), or all parts of your body (general dystonia). It causes a miscommunication between the brain and the nervous system, which subsequently causes muscles to contract involuntarily. I had generalized dystonia. Although it was initially just in my feet and legs, it spread to other muscle groups all over my body.

I was now headed to grade 8 in Paul Roos Gymnasium. I still made use of crutches but was mostly in a wheelchair at that time. School was becoming increasingly difficult for me, but still, I kept pushing forward, despite all the challenges. I had to grow up quickly to be able to handle all the difficulties. As stated previously, I went overseas to play tennis, won 3 gold medals at nationals for hand cycling, and was well on my way to competing in the 2012 Paralympic Games in London. I was also a straight A student at school, very dedicated and disciplined in making the best of my situation.

Although on the surface everything looked relatively well, there were many nights that I cried myself to sleep because of all the pain. Many times, my parents would come home from work and see me lying on the couch deformed and in pain, they would just walk out to compose themselves. For them, it was extremely difficult seeing their child in this situation. Even though I was doing well in sports and academics, I was still just a kid who desperately wanted to be normal and be able to play with my friends.

At that time, I was still in and out of hospitals and seeing doctors. I was in pain 24/7. At a tennis tournament in France (2009), my body started to cramp severely in my last match, and I could not sit up straight - even in the wheelchair. I came home in a very bad condition, and it took some time to recover. One day at school, while I was walking with my crutches from one class to the next, my body completely collapsed. I had to crawl on the pavement to my next class. This was a breaking point for me. I was humiliated, broken and at an all-time low. I could not understand why this was happening to me. From that point on I crawled when I was at home, neither crutches nor a wheelchair could help me. If I was lucky, I maybe went to school twice a week. I could no longer play any kind of sport, so all I did was lay down at home in pain.

My family and I heard about an operation called Deep Brain Stimulation. Deep brain stimulation (DBS) is a neurosurgical procedure that uses implanted electrodes and electrical stimulation to treat movement disorders associated with Parkinson’s disease (PD), essential tremor, dystonia, and other neurological conditions. At the end of 2009, I went in for an operation that implanted electrodes in my brain.

The doctors and my family were hopeful that the operation would make my situation better or that my body would be different. However, it did not work. My situation and symptoms got worse than ever after the operation. For the rest of my school years, grades 10 -12, I was mostly at home. I went to school 2 - 3 days a week. My body had to work extremely hard just to do normal activities. If I would go to school, I would come home, drenched in sweat, extremely tired, and in pain. When I got home, I would only be able to sleep the rest of the day. I missed out on most of my childhood, but my high school years were the toughest yet! I could no longer sit up straight. It was a battle just to be able to sit up. The cramping and daily pain in my body was severe. My body at this point was also completely deformed. I almost lost all hope and wanted to give up on life. There seemed to be no end to my suffering and pain. On top of the physical pain, there were mountains of emotional pain I had to deal with. I had no life, nor life expectancy whatsoever. Doctors said I would never walk again and will probably not live for very long.

Turning Point

During my high school years, I went for physiotherapy every single day, to try and rebalance my body. This was the only thing that seemed to make any difference, although this was also a long journey with many ups and downs. It was extremely hard work to see even a slight improvement. Despite all this negativity, disappointment, hopelessness, pain, and suffering I kept pushing forward. Although at this point, I had zero emotion and just lived day by day. I just tried to survive every day. It took all my strength to make it through the day. I had to choose every day to fight and keep moving forward, and to make that choice took every ounce of strength I had. To this very day, I still have to consciously make that choice.

With continued physiotherapy at Pierre Kruger Physiotherapy throughout the years and with lots of perseverance, grit, and determination, things finally seemed to be getting better in 2012. I was now in matric (grade 12) and was able to go to school more often and even some days without a wheelchair, just on crutches. I still had a lot of pain and on many days, I could not manage or help myself at all, but there was an improvement in my quality of life. With hard work, things slowly got better and better and with time, I was able to give my first steps in over 10 years...

I had hope again. I was once again determined to beat this illness. I started to improve bit by bit and was soon able to operate without a wheelchair, only using my crutches. In September 2012, me and my family went to Israel on a trip, but we had no idea how I would travel and move around. In Israel, I had the biggest breakthrough yet. A friend offered me a small bicycle to see if my parents could push me around on it, but I rode the bicycle on my own, without assistance. This was something I dreamed of doing for more than 10 years. This was truly a miracle from a faithful God. I rode that bicycle through the streets of Jerusalem until late at night.

The photo above is a miracle!

At the end of matric, I went on an outreach to Ghana to spread the good news of Christ and to show people that if you believe and cling to God, any difficulty and circumstance can be overcome. Nothing is impossible!

University

Through all this, I maintained my grades and got an A average at the end of matric. I was accepted into Stellenbosch University as well as Dagbreek Men's Residence. I started my BAcc studies in 2013. Just as I was going to start University, I had a massive setback again. My "pacemaker/battery" that powers the implanted electrodes in my brain, malfunctioned and switched off. I had to be rushed to the hospital for an emergency operation. (This would happen multiple times over the course of the next 5 years). I was back in a wheelchair again. That’s how I started my university career. This once again proved to be extremely challenging for me. Now I was out of the house and had to manage on my own, without the help of my parents.

Throughout all this, I was still going to physiotherapy every day. Once again through hard work I slowly got better, up until the point where I gave my first steps without any assistance whatsoever. I was able to walk on my own. I passed all my subjects and at the end of that year, I went on another outreach to Ghana. I felt the need to help others overcome the circumstances they were facing by faith through grace. The next year (2014, his 2nd year at university), I went on multiple outreaches, trying to help as many people as I can.

I left my studies in my second year, to be in full-time ministry at Kingdom Fire Ministries. At this point, I was still on crutches for most of the time but was able to walk small distances without them. I traveled the world, speaking at conferences, and sharing the good news, the love of Christ and the message of Hope.

My life began to change dramatically. I was now able to walk completely free of any crutches or assistance and travelled the world, declaring God's goodness and telling my story. I still had pain every day but was grateful for the significant change and was still trusting to be completely healed. There were unfortunately still multiple trips to the hospital for emergencies...

I was in a much better condition now, but still had a long journey to recovery. In 2017, I discovered the love of my life, Ingemari Knoetze. We had known each other since birth and even shared the same birthday on 3 September. In 2017 the spark was kindled, and we got married in September the following year.

Ingemari is a massive blessing and support to me, one that I cannot live without.

In 2019 I started studying Computer Science at a university in London. In 2020 I founded Tenubah Technologies. A tech startup that has seen a lot of success over the course of the next two years.

Currently

I am happily married, and my business is growing and expanding. I am still involved in ministry and am passionate about helping people overcome whatever battle they are fighting. I have done my utmost best, to make a success out of a hopeless situation. My testimony has proven doctors wrong, time and time again, and showed them the power of choosing life. Even though I’m thankful for the transformation I have experienced, behind the scenes, there are still many struggles and difficulties. I am still in pain every day and as stated before, still need to make the choice to fight every day. In February of this year (2022), I had another setback in my health and am struggling to cope with everyday, normal activities.

It has been believed that there is no cure for dystonia and that the symptoms can only be managed to a certain extent. With the rapid advancement of medical technology, a possible cure has been found.

Dr. Young-Jun Lee has extensively studied oriental medicine, western medicine, and integrated medicine to find that most of the diseases are caused by the imbalance of the TMJ (Temporomandibular Joint) causing a structural imbalance of the brain, meridian system, and spine and nervous system, resulting in a decrease in vitality, self-perpetuation, and immunity. In order to apply this to the clinical use, the theoretical background and treatment system were systemized to create a systemic treatment using the TMJ (TMJ Balancing Medicine and TMJ Balancing Therapy (FCST)).

Dr. Young-Jun Lee has been able to stabilize the meridian system and the brain nervous system and align the spinal structure through systemic treatment using the TMJ and made it possible to prevent, diagnose, and treat chronic, and incurable diseases, as well as various diseases that are difficult to treat in modern medicine. This includes dystonia!

Dystonia is not incurable. There is hope for Hanno to make a full recovery. This trust would like to help Hanno get to South Korea to the Lee Young Clinic of Korean Medicine for intensive treatments and therapy. The treatment will span the course of 2 months. This is the next chapter in Hanno's story, and you can be a part of it. We need your help to get Hanno the treatment he desperately needs.

How Can I Help